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1 Department for Work and Pensions Research Report No 442 The take-up rate of Disability Living Allowance and Attendance Allowance: Feasibility study Diana Kasparova, Alan Marsh and David Wilkinson A report of research carried out by the Policy Studies Institute on behalf of the Department for Work and Pensions Corporate Document Services

2 Crown Copyright Published for the Department for Work and Pensions under licence from the Controller of Her Majesty s Stationery Office by Corporate Document Services, Leeds. Application for reproduction should be made in writing to The Copyright Unit, Her Majesty s Stationery Office, St Clements House, 2-16 Colegate, Norwich NR3 1BQ. First Published ISBN Views expressed in this report are not necessarily those of the Department for Work and Pensions or any other Government Department. Printed by Corporate Document Services.

3 Contents iii Contents Acknowledgements... vii The Authors...viii Abbreviations... ix Summary Introduction: What is the problem? Introduction Background to estimation Features of DLA/AA Definition of eligibility Summary Scope of the study, its research question, methods and outputs Introduction Scope Research question and aims Methods and outputs Summary Claiming and decision making Introduction Claiming process Decision making process...36

4 iv Contents 3.4 Implications for the take-up measure and feasibility of its estimation Implications for the choice of the take-up measure Implications for the feasibility of take-up estimation Summary Understanding non-claiming and the complementary study Introduction Models of non-claiming Delay Awareness and comprehension Identity and acceptance Skill transfer Critical mass and social networks Threshold or trigger event Risk aversion and the costs of claiming Negative feedback The complementary study Summary Data availability and usefulness Introduction Required data Available data Administrative data Surveys Summary Disability-related surveys and potential approaches Introduction Disability-related surveys The Office of Population Censuses and Surveys (now ONS) Disability Surveys...63

5 Contents v Daly and Noble survey FRS Disability Follow-up Survey Potential approaches Claims-based approach Modelling-based approach Summary Recommended approach Introduction Measuring the take-up rate Phases of the approach Phase A: Development of a screening method, a screener and a survey instrument. Development of the complementary study Phase B: Validation of the survey instrument using the data on claimants Phase C: Piloting the survey instrument on a sample of the potentially eligible, i.e. both claimants and non-claimants. Piloting the complementary study Phase D: Development of a statistical model using the data on claimants Phase E: Piloting of the survey and verification of the statistical model on a sample of the potentially eligible Summary Advantages and challenges of the approach Introduction Advantages Challenges Summary Requirements of sample and sub-samples Sample size Subgroup analysis Summary...99

6 vi Contents 10 Conclusions Introduction Findings The recommended approach Next steps Appendix A DLA and AA: Rules and eligibility criteria Appendix B Topic guides References List of tables Table 1 Table 2 Table 3.1 Table 5.1 Table 9.1 Table 9.2 Table 10.1 List of figures Figure 1.1 Figure 7.1 The potentially eligible population by their benefit receipt and true eligibility status...5 Next steps of the research on feasibility of take-up estimate and their challenges...18 The potentially eligible population by their benefit receipt and true eligibility status...40 Summary of the required data...53 Required sample size by confidence interval and estimated proportion eligible for DLA/AA: binary outcome...97 Required sample size for non-binary categorical data at p=0.5, c=0.05, t= Next steps of the research on feasibility of take-up estimate and their challenges Distribution of claimants by their probability of entitlement...27 Claiming and decision-making processes...75

7 Acknowledgements vii Acknowledgements The authors would like to thank Rebecca Hutten, Michael Lloyd, Mike Daly, David Leach, Graham Heard, Chris Booth, Norman Cockett, Carly Gray, Jane Parkin, Kim Shrapnell, Grant Ferres, Alan Jones, Pauline Heather, Grace Williams and Karen Knott of the Department for Work and Pensions (DWP) for their help and support throughout the project. Our gratitude goes to Professor Richard Berthoud whose comments provided valuable insights into the research area. We are deeply indebted to the interviewees from Blackpool, Manchester, Leeds and London who invested their time in helping us to understand the complexities of decision making and the contents of administrative data sets. We are grateful to the following organisations that provided interviews, help and advice in the preparation of this report: Citizens Advice Bureau, Age Concern, Disability Alliance, MacMillan Cancer Relief, Royal National Institute for the Deaf, Royal National Institute for the Blind and Newham Social Regeneration Unit. We are grateful to colleagues at Policy Studies Institute (PSI), Hilary Salter and Jenny Yip for their assistance in the production of this report.

8 viii The Authors The Authors Diana Kasparova is a Senior Research Fellow at PSI. Alan Marsh is a Professor at PSI. David Wilkinson was a Principal Research Fellow at PSI and is currently at NIESR.

11 Summary Summary Introduction There are over four million people in Britain receiving one of two non-meanstested benefits for disabled people: 2.8 million mostly young and working age people receive Disability Living Allowance (DLA) and 1.4 million older people receive Attendance Allowance (AA), although about 800,000 DLA recipients are now over retirement age. 1 Regular social surveys and the 2001 census indicate that a further six million or so have some kind of long-term limiting illness or disability. 2 Not all these six million have care and mobility needs that would qualify them for DLA/AA if they applied, but some do. Had the population eligible for DLA/AA been known, the take-up rate would have easily been calculated as a ratio of the number of recipients to the number of the eligible. The accurate identification of the eligible is difficult in the case of DLA/AA for a number of reasons: First, the benefits are non-means-tested and so it is impossible to use existing administrative data on incomes to determine the eligible population. Second, the eligibility criteria are based on a person s mobility and care needs which may often be difficult to identify, not least because these needs change over time. Furthermore, the impact of disability on their needs is self-reported and hence, the award decision depends on the ability of the potentially eligible to accurately assess and report these needs. Their failure to do so may introduce uncertainty into the process and require decision makers to seek additional evidence from a medical professional or another source. Finally, since health conditions are difficult to quantify, especially where the problems are multiple, the information on which DLA/AA decisions are based is more open to interpretation than is the case for 1 Those with care and mobility needs who were awarded DLA under the age of 65 may continue to receive it after reaching this age, as long as their needs have not changed. 2 The 2001 Census records 10.3 million people in private households with a long-term limiting illness or disability; 7.1 million are of working age. Government statistics show there are 770,000 disabled children, who are seven per cent of all children (PMSU, 2005).

12 2 Summary other benefits. This genuine uncertainty implies that the decision on DLA/AA may also bear a subjective element on the part of a decision maker. These complexities explain why the truly eligible population is difficult to define. For example, the DLA/AA eligible population in the Family Resources Survey (FRS) Disability Follow-up Survey consisted of the disabled people who may or may not have been in receipt of an award; it excluded those who may have been in receipt of an inappropriate award, even though these people were included in the number of recipients when calculating the take-up rate (Craig and Greenslade, 1998). Although this survey was undertaken with the purpose of estimating the DLA/AA take-up rate, the results were not robust 3 and there is no reliable estimate of the size of the eligible population and hence, the take-up rate. There are suggestions to define a pool of the eligible on the basis of the decision makers assessment of DLA/AA claims obtained via a survey (Purdon et al., 2005). This approach would incorporate uncertainty into the definition of eligibility. Estimating the size of the eligible population and the take-up rate is a difficult, if not impossible, task. This study is part of the wider research that aims to assess whether such a task is feasible. The scope of the study This project represents the first of potentially three stages of research on the feasibility of estimating the DLA/AA take-up rate and a complementary study to it. Progress to each subsequent stage depends on the successful completion of the tasks of the previous stage. The outcome of the research (i.e. stage three) will consist of a detailed proposal suggesting an approach to estimating take-up. Being methodological in nature, this research does not question the current level of fraud and error. Nor does it aim to suggest whether or how the policies and/or practices relating to the benefits in question should change. Describing the three stages of research in greater detail: Stage one aims to analyse existing data and experience of estimation to date in order to recommend an approach to estimating take-up in principle. Stage two refines the recommended approach and tests some practicalities of its implementation. Stage three consists of piloting the recommended approach and developing the final proposal on estimating take-up. The complementary study aims to help formulate appropriate policies to increase take-up and is centred on non-claimants: who they are, and why they do not claim. 3 The take-up estimates ranged between 40 and 60 per cent in the case of AA, between 30 and 50 per cent in the case of the DLA care component and between 50 and 70 per cent in the case of the DLA mobility component (Craig and Greenslade, 1998).

13 Summary Although these objectives are different from the goal of estimating the take-up rate, both the complementary study and the take-up research require an accurate identification of the population of eligible non-claimants. For this reason, the complementary study should be interlinked with the three-stage feasibility research and the take-up estimation itself. Analysis of barriers to claiming in the course of the complementary study would inform an accurate identification of the eligible population and hence, estimation of the take-up rate. If the take-up estimation is feasible, some data collected for this purpose will shed light on the profile of the non-claiming population. The relations between the feasibility research, the complementary study and the take-up estimation should be established at stage one of the feasibility research (this study), while the outputs of the complementary study and the take-up estimation itself are to be produced in the course of two separate projects. This report presents the findings relating to the first stage of the project which aims to assess the feasibility of developing an approach to estimating take-up. Research question, methods and outputs of the study The study examines whether an estimation of the DLA/AA take-up rate might be feasible, given the complexities of decision making and claiming processes, such as the: presence of judgement in both decision making and claiming processes; changing nature of the needs of a disabled person over time; possibility of changes in existing award practices and/or policies; possibility that the potentially eligible may choose not to claim; complexity and open-ended nature of the claim; need for evidence and for a proxy/third party. These features of decision making and claiming processes require thorough understanding and analysis because they determine the choice of the take-up measure, which, in turn, shapes an approach to estimating it. The approach to estimation also depends on the availability of data required for estimation, whether these are collected administratively or via a survey. This study provides a list of data that would be required for the take-up estimation and investigates existing administrative and survey data sets against these requirements. Previous disability-related surveys and research on the approaches to estimating the DLA/AA take-up rate are also examined. Their analysis provides an input to developing an approach to estimation in this study.

14 4 Summary The methods of analysis include: a desk-based review of documentation relating to claims; interviews with key stakeholders, involving decision makers, key personnel in the Department for Work and Pensions (DWP), medical professionals, welfare rights organisations, social workers and data holders; investigation of existing data relevant to claiming and decision-making processes; analysis of potential approaches to estimating take-up of DLA/AA suggested by previous research and disability-related surveys. The output of the study consists of: a description of the process, from claiming to decision making and analysis of its complexities in terms of implications for estimating take-up; an assessment of existing data in terms of its usefulness in representing the process and allowing the estimation of the take-up rate; an examination of potential approaches to estimating take-up; a recommendation of an approach to estimating take-up; a description of requirements of a sample and sub-samples; recommendations regarding the next steps of feasibility assessment. These outputs are now described in turn. Claiming and decision-making processes The analysis of claiming and decision-making processes aims to enable the development of a take-up measure that takes account of their complexities. It is based on a desk-based review of documentation relating to claims, further in the text referred to as claim packs. At its fullest, a claim pack consists of a DLA/AA claim form completed by the claimant or a third party, additional evidence submitted by the claimant and/or a third party, documentation completed by adjudicator(s) and, where necessary, appeals panels. The information obtained during the interviews with DWP officials and decision makers also feeds into the analysis of claiming and decision-making processes. The analysis points out that, in order to account for complexities of existing claiming and decision-making practices, the take-up measure should reflect subjectivity and uncertainty present in both of them. These features imply that different decisions can be made on the basis of similar information, without anyone actually having made a mistake. In the case of DLA/AA, regardless of the fraud and error problems, eligibility does not equate with receipt. Therefore, any definition of eligibility for DLA and AA has to be based on the assumptions about the treatment of uncertainty and subjectivity.

15 Summary This study proposes to incorporate uncertainty and subjectivity into the measure of take-up. Consequently, in this report, the term eligible always refers to the probably eligible and the take-up rate is determined by a ratio of the number of benefit recipients to the probable number of those who would receive it if they applied (i.e. including recipients). Another definition used in this report is that of the potentially eligible. These are people who have some disabling conditions but whose (probable) eligibility for DLA/AA is still to be established. Table 1 presents the potentially eligible population. The probably eligible population occupies the shaded area that is comprised of groups A, E, C and G. And the take-up measure that this study proposes is determined by a ratio (A+E)/(A+E+C+G). 4 Table 1 The potentially eligible population by their benefit receipt and true eligibility status Applied for benefit Not applied for benefit Would have Would have Awarded Disallowed been awarded been disallowed Truly eligible A B C D Not truly eligible E F G H In addition to reflecting existing claiming and decision-making practices, this measure ensures consistency between the numerator and denominator of the ratio. This is because the denominator identifies those members of the overall population that resemble those who receive the benefits (the numerator) in terms of their characteristics, including their needs. It is important to stress that the probabilistic approach to the definition of eligibility adopted in this research means that the proposed measure does not question the eligibility of those who receive the benefits. It treats them all as those (probably) eligible, even if some recipients are awarded the benefit in error. Moreover, since the measure of take-up does not aim at identifying weaknesses in practices and/ or policies relating to DLA/AA receipt it does not, strictly speaking, estimate the proportions of those who wrongly receive DLA/AA or who wrongly do not receive it. Nor does it require a clear definition of truly eligible or an estimate of the number in this category. The analysis of claiming and decision-making processes also reveals that the needs of a potentially eligible person may change over time if their health condition deteriorates or improves. Since changes in needs are difficult to predict, the takeup measure that is proposed in this study is a point in time measure, i.e. it refers to the take-up rate at one point in time and does not account for possible changes 4 Note that in a situation that disregards legitimate subjectivity and uncertainty in claiming and decision-making processes, B=E=D=G=0.

16 Summary in needs of the eligible population in the future. Nevertheless, it is desirable to develop an approach that is able to shed light on some possible changes in needs in the future. Being a point-in-time estimation, the take-up measure reflects the current state of decision-making practices and related policies. This implies that if changes to these practices and/or policies are anticipated in the future, they should be incorporated into the approach to estimating take-up at its development stage. At the same time, since the take-up rate is an aggregate estimate it may be more sensitive to some changes (e.g. an introduction of means-testing) than to others (e.g. an increase in the number of disabling conditions to be accounted for in award decisions). The analysis of claim packs and interviews with decision makers are also used to identify requirements of the data necessary for the estimation of take-up. These data should: match that available to decision makers; be relevant to the entitlement criteria; contain information on all the potentially eligible, regardless of whether they are claiming or not. These requirements have a number of implications: the reasons for non-claiming should be examined in order to enable an accurate identification of the potentially eligible population, i.e. including those reluctant to claim; the data should contain information on impairments and medical conditions as well as on the needs of the potentially eligible in order to account for cases where the potentially eligible are not in a position to correctly assess their needs; the content of supporting evidence also has to be reflected in the data; the information on the needs of the potentially eligible may have to be collected from a variety of sources, including a medical professional and a third party; the data collection process may need to take place in stages as this is the case when decision makers seek additional evidence in order to arrive at a decision. The results of analyses relating to the reasons for non-claiming and to the ability of existing data to provide the required information are the subject of the following two sections.

17 Summary Understanding non-claiming and the complementary study In order to assess the take-up rate, the data on the potentially eligible population should include information on those who for some reason do not claim. Identification of these people requires understanding of the possible reasons for non-claiming. The analysis is based on the information and views provided by interviews with DWP staff, a number of welfare rights organisations and social workers. It suggests that there are eight main models of non-claiming: delay; awareness and comprehension; identity and acceptance; skill transfer; critical mass and social networks; threshold or trigger events ; risk aversion or the costs of claiming; negative feedback. These models point to the varied and significant barriers that stand in the way of claiming. Since these barriers to claiming are also barriers to take-up measurement, people s reasons for non-claiming have to be taken into account in the design of the approach to measuring the take-up rate. They also have to be accounted for in the design of the complementary study that centres on non-claimants and investigates their characteristics, including their social location and attitudes towards claiming. This interrelation between the subjects of the complementary study and this feasibility research allows the complementary study to be developed and tested as part of the development and testing of the approach to estimating take-up. At the same time, the development of an approach to estimating take-up should benefit from the results of the complementary study as they would feed information on non-claimants into the main research. Data availability and usefulness The analysis of existing data, in terms of their usefulness in estimating take-up, involves the examination of both administrative and survey information. It is based on interviews with data holders at DWP and Disability and Carers Service (DCS) and a review of the relevant documentation. The list of variables required for the estimation of the take-up rate is developed, noting that the data should relate to all those potentially eligible (both claiming and non-claiming) and include, among other information:

18 Summary care and mobility needs linked to the DLA/AA entitlement criteria; source of evidence; date of the disability onset. Existing administrative and survey data are examined against the list of required data. The analysis of existing administrative data suggests that no set in its present form enables an estimation of the take-up rate. Accurate administrative data only exist on the number of claimants, the number of recipients and their award rates. Additionally, information obtained during a one-off three-day data collection exercise (described in Section 5.3.1) may help to identify those very likely and those very unlikely to be eligible among the general population. And the data collected during the Customer Case Management (CCM) pilots may be used in an analytical exercise to establish the relationships between various pieces of information required to arrive at a decision. This exercise would be useful if a system of numeric codes was to be developed as a means of representing the information from the claim pack in some more structured way than free text. Therefore, although administrative data can be used to measure the number of recipients, they lack other data required for identifying eligible non-claimants and estimating the take-up rate. With regard to a survey as a means of collecting the data to estimate the take-up rate, the analysis of existing social surveys that provide information on the health status of the population aims at identifying their potential to estimate take-up or to inform the design of a survey if this was chosen as a means of collecting the data to estimate the take-up rate. The following surveys are examined in this study: the British Household Panel Survey (BHPS); the Health Survey for England (HSE), Scotland and Wales; the English Longitudinal Study of Ageing (ELSA); the General Household Survey (GHS); the Labour Force Survey (LFS); the House Conditions Surveys for England, Scotland and Wales; the Health Education Monitoring Survey (HEMS). The analysis demonstrates that none of these surveys can be used for estimating the DLA/AA take-up rate because none of them fully covers the population of interest. Some of these surveys have limited geographical coverage, some exclude children, some focus on people aged 50 and over, some do not include those living in residential care. However, the elements of these surveys (e.g. their questionnaires and methods of selecting people into the survey) should be investigated at stage two of the research if a survey approach to estimating take-up is adopted.

19 Summary Since none of the existing surveys or administrative data sets can be used to estimate the take-up rate, some survey-based approach to collecting the data and estimating take-up should be developed. However, prior to developing such an approach, consideration should be given to the existing experience and research relating to survey-based methods of collecting the disability-related data and estimating the DLA/AA take-up rate. Disability-related surveys and potential approaches The methods adopted in previous disability-related surveys, and those suggested by research more recently, are examined in order to assess their suitability for the estimation of the take-up rate. This shows that none of the surveys would produce a required take-up estimate if repeated. Although the aim of the FRS Disability Follow-up Survey was also to estimate the DLA/AA take-up rate, the definition of eligibility and the measure of the take-up rate adopted in that survey are different from the ones proposed in this study. Moreover, the FRS Disability Follow-up Survey excluded people living in residential accommodation. The Office of Population Censuses and Surveys (OPCS) Disability Surveys aimed to estimate the severity of disability in the population but not the entitlement to AA or Mobility Allowance, which pre-dated DLA. Their focus, therefore, is different from the aim of this research. However, detailed analyses of certain elements of these surveys are likely to inform the research at stage two of the project, if a decision to progress to it is taken. For example, methods of selecting the respondents into the survey and the design of the OPCS Disability Surveys would need to be investigated when developing an approach to identifying the potentially eligible population. The main questionnaire and the methods of presenting the claim form information in some structured way developed for the FRS Disability Follow-up Survey are likely to inform the design of these elements of any survey aiming to estimate the DLA/AA take-up rate. The analysis of two more recent research proposals put forward by Purdon et al. (2005) suggests that one of them (a claims-based approach) is unlikely to achieve the desired result on both methodological and practical grounds and another (a modelling-based approach) should be modified in order to avoid spurious results. The claims-based approach recommends conducting a survey where respondents (the population of non-claiming potentially eligible people) or someone on their behalf fill in the claim forms and agree to these being submitted to decision makers for an assessment. Decision makers then may seek and obtain additional evidence, if this is required. Their decision determines the respondents eligibility. This approach addresses the complexity and open-ended nature of the claim form and also the need for evidence. However, it has a number of features that render it unfit for purpose: First, the authors recommendation seems to stop at the initial decision of an adjudicator rather than go on to replicate appeals to be lodged by those at first

20 10 Summary deemed ineligible. Given subjectivity and uncertainty surrounding the process, the success at appeal is possible and it would alter the size of the eligible population determined by the first round of decisions. Second, the approach assumes that respondents will agree to claim the benefit and therefore, ignores the possibility that some potentially eligible may choose not to claim. This approach will exclude those eligible non-claimants who will not give permission for the claim to be submitted on their behalf. The estimated take-up rate will therefore not be valid, since respondents claims cannot be considered by decision makers without respondents permission to do so. Further, in order to obtain a robust take-up estimate under this approach, some people who have a relatively low probability of success would need to be persuaded to claim. However, it is difficult to envisage a conversation with a respondent where they are told that they are unlikely to be entitled to benefit but need to fill out all the forms anyway just to check. Third, if respondents are aware that decision makers will consider their cases and arrive at a clear yes or no answer, there is an issue of acting on the decision makers decision. If the answer is yes, it seems reasonable to abide by it. However, it also seems reasonable that those who are refused an award are informed that another decision maker might have reached an opposite decision on their case. No one though, would be in a position to assess the probability of reaching that opposite decision. Moreover, this would aggravate an ethical problem of raising hopes unnecessarily. Fourth, claim forms filled in by interviewers may differ in a consistent way from those filled in by claimants (or a third party on their behalf) in, say, how the needs are presented. This may affect the decision makers judgement and in this case the take-up rate will not accurately reflect existing practices. Although Purdon et al. (2005) do not suggest this, it may be possible to obtain the information required for reaching an award decision using a survey questionnaire and then transfer it into the claim form and submit the form to a decision maker. However, this would raise an ethical issue of respondents eligibility being assessed without their consent. But even if respondents are not informed about their answers being submitted to decision makers, this approach is unlikely to deliver because decision makers will probably be able to recognise the artificial claims. Their decisions would not be reliable, therefore. In order to avoid these claims being instantly recognised, the artificial claims would have to include names and signatures; the practical difficulties of arranging this would be huge. Moreover, in order to estimate take-up, these artificial claims would have to be taken out of the system. That would also represent a difficulty at a practical level. Examination of another, modelling-based, approach recommended by Purdon et al. (2005) demonstrates the complexity of estimating the DLA/AA take-up rate and suggests that in order to avoid spurious results, the estimation should be conducted in phases and the achievements of each phase be verified before progressing to

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